In 2008 Tracy Jallow was diagnosed with Antiphospholipid Syndrome (APS), a disorder of the immune system that causes an increased risk of blood clots and symptoms such as tiredness or numbness and tingling in different parts of the body.

Receiving the APS diagnosis only 17 years after her symptoms first began, Tracy underwent years of struggling alone, doubting herself and her symptoms. Once diagnosed she had finally had something tangible to learn about and deal with. She then made it her mission to raise awareness about this long-term condition and to support other people with invisible illnesses.

Through the charity APS Support UK, Tracy was invited to co-write a paper in the BMJ with King’s Professors David d’Cruz and Heidi Lempp about living with Antiphospholipid Syndrome, detailing her journey to diagnosis. Following publication of the paper Heidi, who is Professor of Medical Sociology in the School of Immunology & Microbial Sciences, invited Tracy to join the Expert Patient Group, and also to become a Patient Educator at GKT Medical School. This afforded Tracy an opportunity to work alongside health care specialists and medical students, sharing her lived experience.

She quickly became involved in a wide range of activities through the Expert Patient Group, such as teaching about life with disability to second year students within the Cultural Competence strand of the undergraduate medical curriculum, contributing to grant applications, and even collaborating with a mental health institute in Patagonia (via zoom) sharing measures on how best to assist people with mental health difficulties return to work. Tracy is also a regular writer for the group’s Expert Patient Blog.

At work, Tracy joined the HMRC wellbeing group for chronic pain and was then asked to co-facilitate the meetings. Through her experience with APS she was able to bring topics to the conversation that were both relevant and a source of support for her colleagues who had similar difficulties with their health. “Most importantly”, she says, “I can show empathy and signpost people to the relevant services inside and outside of HMRC”.

"I fell into volunteering quite naturally because of the journey that I had been on, and I wanted to share my experience whilst raising awareness of not only what APS is, but equally as important, what living with a hidden disability is like.”

The annual New Year’s Honours recognise the UK’s outstanding contributors to sustained public service, youth engagement and community work. The Lord Lieutenant of London will present Tracy with her medal, and she will also receive an invite to the Kings Garden Party later this year. 

Read the Muskuloskeletal Expert Patient blog.